 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
|
|
Copyright Pacers Consulting. Recovery from mental illness: From Theory to Implementation and Evaluation Mara Pacers, BBSc (psych), BSW, MPPM, PhD cand. Recovery and Rehabilitation Centre Claire Stucas, B.A, psych Hons. Aspire, This is an approximate transcript of a paper given by Mara Pacers and Claire Stucas at the Vicserv Conference in I want to preface this paper by stating that I shall be speaking from a service delivery perspective. I would, however, like to state, for the record, that the Recovery philosophy, and the frameworks that we are speaking about are derived from a consumer perspective. In fact I approach all my program design and evaluation work from the position of whether I myself would use this program if I needed it, would I refer my mother or my son to it. This interface between the personal, consumer perspective and a ‘professional’, service delivery perspective has always been cumbersome and difficult to articulate. One of the difficulties has always been language. Additionally, the nature of goals (consumer goals v/s service or govt. goals) have been fundamentally different. In the current climate, where policy directives encourage the adoption of a Recovery perspective within service delivery systems, we must address this interface. I shall be identifying the current service delivery framework as a “Support Based system, and comparing it to a “Recovery Driven” system. For the purpose of this paper I will be focusing on how to change from a support oriented program to a Recovery oriented program from the service providers’ perspective, and then handing over to my colleague, Claire Stucas, to take us through initial outcomes to demonstrate the success of this approach. Aspire At his point though, I’ll borrow one of Claires slides (fig 1), to demonstrate that what I shall be saying is not just hopeful, feel-good theory, but has results in improved quality of life for people diagnosed with a mental illness. It’s a bit like reading the last page of the book first. Even though we are just starting to look at the data, there appear to be compelling results to support Recovery Based Rehabilitation. Figure 1. Percentage of participant’s showing change in Quality of Life (across 4 domains) after 12 months in the program. Part A. Theory. One of the issues concerning the adoption of Recovery as a guiding force in the evolution of mental health services is that the term is not well understood, indeed it is often profoundly misunderstood. The word ‘recovery’ is in daily usage and everyone has their own definition for it. However, as an academic term, “Recovery” has a very distinct definition. Recovery was originally a concept put forward by the consumer movement, to challenge the notion that ‘once diagnosed with a psychiatric condition, the person will always be mentally ill and limited as to what they can do’. This was largely based on anecdotal evidence, with consumer rights pioneers such as Patricia Deegan demonstrating that people with a serious mental illness are capable of achieving great things. There has been growing research over the last 20 years into this phenomenom called Recovery. We now have a robust basis for understanding what helps and what hinders Recovery. Recovery itself, is more a philosophy and set of beliefs, than any set of interventions or approaches. It basically states that the experience of ‘symptoms of mental illness’ are not a barrier to living a successful and satisfying life. One can be Recovered whether one experiences symptoms or not. That being diagnosed with a mental illness does not mean that life is over, and that one should sit on the sidelines waiting for a cure. I am currently in the final stages of my PhD in this topic, and have struggled to come up with a concise definition that illustrates all aspects of Recovery. The closest I can get is that “Recovery is a state where there are no internal or external limitations placed on my capacity to do things, on the basis of my psychiatric diagnosis”. In other words, What I can or can’t do is NOT determined by my psychiatric diagnosis. In definition terms it could also be written; “ Recovery is the realisation that what a person can and can’t achieve, is NOT determined by their psychiatric diagnosis”. As such, a person who has been diagnosed with a mental illness should not be limited in their expectations of life. In our current culture this statement cannot be held to be true. People are severely limited in what they can and can’t do. They are limited by the beliefs, attitudes and opportunities provided by society, and they are limited by their own beliefs about what their lives will be like now that they are “mentally ill”. This is the change that we are trying to effect, to eliminate these limitations by changing from a Support Based system for people with a mental illness to a Recovery Based system. It is the very nature of stigma within our culture that we need to change. Extensive research has factually proven that these widely held societal beliefs are myths. Indeed the research being undertaken within the Aspire program also directly supports this, and challenges the beliefs of consumers, their families, and other mental health services. If we are to be successful in implementing a Recovery Based system, and individuals are no longer subjected to the multiple traumas of loss that occur as a result of being labelled as mentally ill, then the very nature of services in the future will change. Without a loss of hope, motivation for adaptation will remain strong. If ones life is not destroyed as a result of being labelled, then one will not be faced with the daunting task of rebuilding it. The less trauma and loss that people experience, the less they will have to recover from. It also means that the focus of mental health services must change from categories of mental illness i.e. diagnostic groups such as schizophrenia, bi-polar, depression etc, to a detailed specification of the individual symptoms experienced at any particular time, by the person, and the impact of these on their life. The aim of mental health services would become to assist people to adapt to their specific symptoms in order to minimise their impact on what they are/want to be doing. You can’t adapt to schizophrenia, but you can adapt to hearing voices. So it is clear that a Recovery oriented system would be significantly different from our current system. The current system is based on providing support to individuals so their basic needs and survival is ensured. It is, so to say, to keep people afloat. In the case of mental illness these services are often expected to be life long. Our system provides public health, housing and income support. It is a fantastic thing that in This is very different to other illnesses or disabilities. In the case of physical or cognitive disability the focus has always been on adaptation to the circumstances. If one no longer has the use of the right hand, new techniques are learned. If one can no longer see, then a whole system of adaptations have been developed, to ensure that the individual can still live a productive and satisfying life. A Recovery perspective, means that mental illness is approached in exactly the same manner as other debilities, through adaptation. In fact, adaptation is so embedded in us that it has ensured our survival as a species. We adapt to things all the time at both a conscious and subconscious level. Not so with mental illness. When was it exactly that we learned to not adapt to cognitive or emotional states, to specific symptoms? So how does one put these concepts, philosophies and beliefs into practice? This is the main question that practitioners and consumers ask me. How do I move from one to the other? It is imperative to understand how our current system operates, and to understand what concrete changes need to be made to be able to implement a Recovery focus in practice. I compare the two below. Support Based Services. 1. Case management Clinical case management is the central means through which services are currently provided or organised. This also includes assertive case management which is used in circumstances where clinicians judge that clients are not managing their mental health appropriately. In extreme cases it is the means by which the safety of individuals and the community is maintained through an outpatient facility. Case Management practices are supposed to be done together with the client, in partnership. In reality however, in the vast majority of cases, the client isn’t even present at case reviews, where a panel of mental health staff decide on the treatment plan. The more assertive the case management, the less it resembles a Recovery framework. The way that goals are set in case management is also a case in point. The goals are typically extremely limited and focused on service provider aims. The methods used by Aspire and other Recovery based services are in direct contrast to traditional goal setting. More about methods and interventions under the implementation section. Given the time constraints on this presentation, I can only give the briefest overview of each of these points, even though they are complex issues. 2. Provision for basic needs Needs are ascertained and then provided, often by case managers. Among these needs are things for basic survival such as income, housing and both psychiatric and health needs. A non-specified or ad-hoc system of prioritisation amongst needs is employed by case managers and case workers in other services, and may or may not coincide with the clients own priorities or perceived needs. In many cases this prioritisation is so automatic that it has become unconscious and workers are not even aware of it until questioned and challenged. 3. Provision of support People with mental illness are often very socially isolated. The reasons for this are very complex. Let us just agree at this stage that both internal and external stigma plays a significant role in this isolation. As such MH staff also provide support for individuals to assist them to survive in the community, support in the activities of daily living and to provide opportunities for social interactions in groups and programs. 4. Primary role for consumer as compliant receiver (consumer) of care and advice in order to reach and maintain treatment plan goals. While in recent years the emphasis has been on involving consumers in their care, this happens in an ad-hoc fashion and within the philosophy of case management. It is the MH worker who will make the ultimate decision in all matters of significance, e.g. that money is spent responsibly, that allocated daily tasks are completed, etc. Success is often measured by looking at externally set criteria, which in many cases is about compliance to other people’s goals. Goals that you or I would often find obtrusive, insulting and pointless. As such when consumers are asked what their goals are, there is an unspoken subset of predetermined goals from which the consumer is urged to choose, such as live independently, anger management, better hygiene, stop smoking or using drugs, get a job.. The list goes on. Success is measured by looking at “objective” criteria such as functioning on particular tasks without separating capability from desire, or on symptomatology without exploring impact of symptoms on the individual. There are no “objective” criteria for success from a Recovery perspective. They must be subjective because they are completely related to the individuals goals and their personal perceptions of success and satisfaction. The objectivity of current outcome measures is an illusion, and removes the person with the mental illness from the equation. 5. Limited expectations for improvement The previous item and this one are related, as are most of these things. They are a reflection of how we implement our belief system whether we are conscious of it or not. Unfortunately, in my experience most people, including those with a mental illness, their families, the community, and mental health professionals all have limited expectations with regards to the improvement of people with mental illness. This is the thing that destroys hope! This is the source of much of the anguish and despair of people who have been diagnosed with a mental illness. The abolishment of your previous hopes, dreams and aspirations, the terrible grief of leaving who you are/ thought you were behind, with nothing expect hopelessness and fear to replace it. The worst part of this is that it is not true. If we simply compare the medical approach to breast cancer to that for mental illness, (Cheryl Gagne spoke of her experience of this last year) it is true some people do die from breast cancer and some people with Mental illness are severely symptomatic for long periods of time. However the emphasis between these two is diametrically opposed. HOPE for breast cancer, DESPAIR for mental illness. It is just wrong. Studies, including our own have shown that the vast majority of people with mental illness do recover to live successful and satisfying lives. 6. Don’t stir up unrealistic goals This is one of the most common reasons cited for setting limited expectations for improvement. But I ask you LOGICALLY, is it better to make 100% of people suffer by making them give up hope, just in case some (lets say 15%) don’t reach their goals over time?. The emphasis must be in the other direction!! 7. Aim of ‘Sustainability’ in the community This is usually the highest goal that mental health staff, families, and often consumers themselves have. If this was given to me as my maximum goal in my life, or given to you as your crowning achievement – how would you feel? Really how would you feel? Motivated, energised, fulfilled, happy? All of the different aspects of a support based system sound good in themselves, they are about providing a life ring to people floating in the ocean of mental illness. It says, don’t worry – we’ll make sure that life ring is always there for you. Be happy you will stay afloat. Recovery is about something more. It is like providing a boat with oars and a sail. In times of need you can just float around, like in the life ring, but the expectation is that you will learn to sail your own boat and go where you want. Recovery Driven Approach: 1. Positive expectations for improvement (imperative to keep hope intact) So how is Recovery different. This is probably the main thing. It is not easy because it goes to our core beliefs as a society who has been fed the message that Mental Illness = the end of life as you knew it. 2. Aim of retaining or re-identifying personally satisfying life goals. Minimisation of loss. The trauma and grief of being diagnosed with a mental illness and all that it means can sometimes be more debilitating than the experience of the symptoms themselves, and the effects can last much longer. We need to ensure the least disturbance to a persons life. 3. Absolutely no limit on goals This is often a contentious issue. Workers often come to me and say, but they set such unrealistic goals, there is no way that they will achieve that and then they get disappointed and stop trying. There are many things contrary to a Recovery philosophy in this statement. Perhaps the most important thing is that No goal is a waste of time, especially where the reconnection with dreams comes into play. If the staff work in partnership with the individual, and the focus is on learning and helping someone identify the best goal, then any work, on any goal, will be beneficial. And I mean any goal, astronaut, hairdresser, movie star, psychiatrist.. anything at all. There are many specific techniques that I could describe in this section. They involve specific knowledge and training, and are employed by Aspire staff. Let me just emphasise that I have never come across a goal identified by someone that wasn’t worth working towards. In every single case it is more beneficial to work on the goal than to reject it and focus on something else. 4. Active focus on adaptation to symptoms through Rehabilitation, support & therapy. This section is vitally important. It is also where staff skills,knowledge and training are imperative. Adaptation is about change. There are many ways to facilitate change, and staff are required to understand and be skilled in facilitating change. For example, lets look at the 5 indicators of ‘readiness for change’ as developed by Boston Uni.
1 + 2 = Motivation, 3 + 4 = The basis for true informed choices, without which you won’t have a good match between goal and solution. Each individual must have addressed each of these factors with regards to each goal before you can expect successful change. Once you have identified a specific goal, THEN you can look at the specific impact of individual symptoms on that goal and devise ways to adapt. Recovery requires that one doesn’t choose a goal on the basis of symptoms (ie focus on symptoms and what one can’t do), but rather that one focuses on adaptation around the symptoms to achieve the goal that one wants (focus on goal and what one can do). In a support based system this process is usually conducted the other way round, a role is constructed around the symptoms. Rehabilitation, support and therapy are the mechanisms to assist people to change. This is what Aspire does, and the outcomes we are going to present indicate the impact of these interventions on individuals. 5. Partnership with M H professionals There is simply no other way to work in a Recovery based system. 6. Provision for needs reflecting changing impact of illness on the individual. A Recovery based system is not blind to the changing needs of individuals. When one is experiencing debilitating symptoms, one needs support and care, a safe environment, and effective treatment. However, when the symptoms change or ease off, then the nature of services must also change to reflect this. If someone was not in the position to make important life decisions during an acute phase, it does not mean that they can’t do this when they are feeling more in control. It is not an easy journey, and often goes in cycles. Mental health workers are there to provide support and to keep hope alive, when the person needs it, and to ensure that the individual directs their own rehabilitation as much as possible. Part B. Implementation: Implementation of the theory requires careful planning in order to ensure success. It is not enough simply to add the word ‘recovery’ in the title and expect things to be different. These are some of the important parts in successful implementation of such a profound change. 1. Common understanding of Recovery Philosophy It is absolutely vital that each person understands what is meant, from the Board of Management right through to casual staff. This common understanding needs to be made EXPLICIT through a statement that can be referred to over time. 2. Acceptance and agreement with new values and beliefs. All parts of the organisation need to make a commitment to work within this framework. It becomes one of the organisational values. It is expected that all staff will comply. 3. Program design, procedures & processes A Recovery based approach will not endure in practice if it is not supported by organisational/program systems. It needs to be reflected in the paper work of entry forms and case review forms. Questionnaires and client information will have a different focus. Program resources and structures will need to be altered, eg 1:1 interview spaces, enough time for staff to meet individually with participants, etc. 4. Fear and grief re changing practice A careful framework needs to be constructed to enable staff who have been working for years using different methods and techniques, to integrate Recovery into their practice without guilt or feeling that they were doing it ‘wrong’ in the past. Demonstrations and modelling from other staff who have made the transition is very useful. Access to information about outcomes. Reassurances during the change process. 5. Risk management This is an area that many people have difficulties because the locus of control has shifted. It is about the dignity of risk, and of reducing the fear staff experience of anticipating that participants will fail. Reframing ‘failure’ as testing and learning. To actively use this to develop further strategies and skills and to continually adapt to a shifting landscape. Ultimately this is empowering for both staff and participants, equalising. 6. New skills frontiers Working within a Recovery framework requires a high level of skill and expertise. Staff can not be expected to just “know” how to do this. Training and support need to be provided at adequate levels. A staff culture of learning needs to be fostered. 7. Recruitment and Training Recruitment of new staff needs to be purposful, choosing people who share the value base. New staff also need to be trained. As such regular induction training, and upskilling should be included in agency training plans. 8. Challenges of discordant beliefs and values (staff/participants/services/families) When friction between beliefs is evident it must be openly addressed. With regards to families and participants continual demonstration of evidence in a respectful and compassionate manner. With other services, it is advisable to provide as much information as possible. Protocols may have to be developed to clearly outline roles and expectations. 9. Old habits die hard Slippage is common, and it must be anticipated. As such regular updates reaffirming expectations are essential. Evaluation is important to demonstrate benefits. Systems and processes must all be congruent and support the new practice requirements. 10. Monitoring, measurement, outcomes Essential to monitor impact of service delivery. 1. For staff to feel validated that what they are doing is good. 2. For the agency to demonstrate its efficacy in service delivery. 3. For the community and funding bodies to accept the advantages of a Recovery driven system. 4. For the continued development and improvement of services. 11. Evidence of Success Needs to be shared with everyone! 12. Wider education The more people are aware of Recovery Based services and their positive results, the more likely it is that the old beliefs and stigma surrounding people with mental illness will be challenged and disappear. I’m imagining a society which in 50 years will look back and shake their heads, asking, ‘how could they think that people with symptoms of mental illness are different to us, that they’re not normal and that they can’t expect to live a satisfying and successful life’?
Part C. Evaluation and Outcomes. Aspire, A Pathway to Mental Health, is a not for profit, non-government organisation offering recovery and rehabilitation services to people diagnosed with a mental illness across The WHOQoL BREF is a 26 question assessment which has been normed to Aspire has been administering the WHOQoL BREF to participants since the commencement of the program in The data collected to this point is still in the preliminary stages. Currently, data from the two northern services in Burnie and Launceston have been included, with the southern service in As each participant completes a WHOQoL their score is compared to the initial score from the WHOQoL completed on entry to the program, therefore these scores are the actual increases in quality of life during participation. The overall analysis of the data is promising and shows that participants on the Aspire program experience increases in QoL during their involvement. Figure One shows the percentage of participants who experience either an increase (70%), decrease (25%) or no change (5%), to their overall quality of life during their participation in the program. Figure 1. Percentage of participant’s direction of change across four domains after 12 months The following figures break down the overall analysis of quality of life into the WHOQoL domains previously mentioned. Figure Two shows the percentage of participants who experience an increase, decrease or no change to the perceived quality of their physical health. The physical domain includes questions regarding physical pain and discomfort, dependence on medical substances, energy, sleep and mobility. Figure 2. Percentage of participant’s direction of change in WHOQoL scores over time for physical domain As can be seen from the graph, there is a peak in perceived satisfaction with physical health after a nine month involvement with Aspire, however the general trend shows increasing quality of life over time. Figure Three displays the changes in participants perceived level of satisfaction with psychological health. The psychological domain includes questions on positive and negative affect and self esteem. Figure 3. Percentage of participant’s direction of change in WHOQoL scores over time for psychological domain. Figure Three shows a steady rise in the number of participant who experience an increase in perceived level of satisfaction with psychological health over the 12 month period of involvement with Aspire. Figure Four highlights perceived changes in quality of life for the social domain. WHOQoL questions for the social domain explore satisfaction with personal relationships and the level of support that participants received from their friends. Figure 4. Percentage of participant’s direction of change in WHOQoL scores over time for social domain The social domain appears to remain the most stable over a 12 month involvement in a recovery program. Figure Five displays the change in participant’s satisfaction with their environment. Questions for this WHOQoL domain include satisfaction with the physical environment, home environment, financial resources and access to health care. Figure 5. Percentage of participant’s direction of change in WHOQoL scores over time for environmental domain Perceived change in the environment has a large initial increase and then displays a plateau from six to twelve months. It should still be noted that there is a large increase in satisfaction with this area from the score obtained at three months. Figure Six identifies the perceived changes in the two additional WHOQoL scores of QoL and SwH. These two measures are explored by one question each. Figure 6. Percentage of participant’s direction of change in WHOQoL scores over time for quality of life and satisfaction with health. As is evident from the graph these two domains are affected quite differently. QoL appears to take a longer time to be impacted on, whereas SwH increase steadily over the program with a small decline at twelve months. Overall the data displays that participants experience increases in their QoL during their involvement with a recovery focused service. Aspire plans to continue with this data collection to further examine impacts to QoL over longer periods, as participants can be involved with the program for a period of up to three years. Additionally, the current data looks at the direction of change only, with greater numbers of participants being involved for longer periods Aspire will also look at identifying the range and degree of change to participant’s perception of QoL. Mara Pacers www.recoveryandrehabilitation.com.au Aspire
Bibliography. (A small sample of relevant reading) Anthony, W.A., The principle of personhood: The field’s transcendent principle, Psychiatric Rehabilitation Journal, Vol 27 (3), winter 2004, pg 205. Anthony, W., Boydell, K. M., et al, Making do on the outside: Everyday life in the neighborhoods of people with psychiatric disabilities, Psychiatric Rehabilitation Journal, Vol 23 (1), 1999, pgs 11. Boydell, K.M., et al, Interpreting narratives of motivation and schizophrenia: A biopsychosocial understanding, Psychiatric Rehabilitation Journal, Vol 26 (4), 2003, pg 422. Corin, E, The thickness of being: Intentional worlds, strategies of identity and experience among schizophrenics., Psychiatry, Vol 61 sum, 1998, pg133-146. Corrigan, P. W. , Giffort, D. , Rashid, F. , Leary, M. , Okeke, I. Recovery as a psychological construct, Community Mental Health Journal, Vol 35 (3), 1999, pgs 231-239. Davidson, Larry, Living outside mental illness, 2003, New York University Press, Davidson L., et al, Recovery in serious mental illness: a new wine or just a new bottle?, Professional Psychology: Research and Practice, Vol 36 (5), pgs 480-487. Deegan, P. Recovery: The lived experience of rehabilitation, Psychosocial Rehabilitation Journal, Vol 11 (4), 1988. Deegan, P. Recovery as a journey of the heart, Psychiatric Rehabilitation Journal, Vol 19 (3), 1996. Farkas, M. , Soydan,A. S. , Gagne, C. Introduction to rehabilitation readiness, 2000, Boston University Press. Nora Jacobson, Experiencing recovery: A dimensional analysis of recovery narratives, Psychiatric Rehabilitation Journal, Vol 24 (3), 2001, pgs 248. Onken, S.J., Mental Health recovery: What helps and what hinders. The Fourth International Conference on Social Work, 2004, Ralph, Ruth O, Review of recovery literature. National Association of State Mental Health Program Directors, 2000, Ridgway, P. Restorying psychiatric disability: Learning from first person recovery narratives, Psychiatric Rehabilitation Journal, Vol 24 (4), 2001, pg 331. Russinova, Z., Providers' hope-inspiring competence as a factor optimizing psychiatric rehabilitation outcomes, Journal of Rehabilitation, Vol 65 (4), 1999. The WHOQOL Group, The World Health Organisation Quality of Life Assessment (WHOQOL): Development and General Psychometric Properties, Soc. Sci. Med. Vol 46 (12), 1998, pgs 1569 – 1585.
|